Wishes

Jake is bald. I was looking at his head today. There’s a pretty good scar from an ice skating accident in the 5th grade. It was stitched up in the ER. They didn’t do a very good job, probably thought it would never show. There are a couple of disc shaped objects under his skin. It is the ventricular shunt they put in January 9th, 2015. I could feel it before, but now I can see it. There is a decent sized, semi-circular scar where they lifted up the scalp to place the shunt. If he ever has male patterned baldness,  it will be visible. His spine is very pronounced. He is 143 pounds.  There are 4 scars from the lung biopsy and an abdominal scar where the pump drains into nowhere specific. He literally has no calf muscles left. He walks slowly and was given a cane to steady himself. He decided using the cane was harder than he thought. He walked for 6 minutes. He was glad, but longs to ride his skateboard. He has come back from this twice before…he’s asking me questions about things that he has been dreaming about. His dreams are vivid, realistic. He will fall asleep instantly. His body twitches and jerks. Sometimes he reaches out and talks. It would scare the hell out of us, but when he wakes up, he’s there. He talks and thinks normally. Yes, this is the 3rd time that he has been broken down, starved, drugged, pumped with medications with frightening side effects.  You can do it, Jake. You can regain your strength, your balance, your cognizance.  Your hair will grow again, your muscles and strength will return. Maybe this latest treatment with take away the neuropathy pain in your toes. You rated the pain a 2.  That in itself is a blessing. Within a year, you will stop taking the drugs fighting the infection in your lung, the prophylactic antibiotics, antiviral and antifungal won’t be needed, your body won’t reject the transplanted cells and the immune suppressants can be tapered off. Hopefully the pain medicines will be gone, no more pills! No more weeks in the hospital. Your sister’s cells, God willing, will find their way into your marrow and will thrive, providing you with a new healthy immune system. And you will look and feel normal. You will be back at school, beautiful,  healthy and happy…

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